The Six Year Diabetes Diagnosis

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There are many types of diabetes, not just Type 1, 2, or gestational. Last month, Jen, The Girl Without a Pancreas, shared her story of undergoing a total pancreatectomy, leaving her insulin dependent, classified with Secondary diabetes. There’s also a type of diabetes called Type 3c which is the result of pancreatic damage.

Micha lives with Type 3c diabetes and was willing to share his incredible story:

My name is Micha, I’m 28 years old and work as a teacher in a comprehensive school in Krefeld, Germany. In 2010 I was diagnosed with diabetes. First, I was categorized as type 2 because the blood tests showed a little insulin production and no typical type 1 antibodies. However, from 2016 onward, my “official” diagnosis is type 3c or so called secondary diabetes. The reason for this type is, in general, a damage of the whole pancreas (the endocrine and the exocrine part). In my case, after multiple pancreas inflammations over the years. My insulin production is as low as the insulin production of a “normal” type 1 diabetic. In addition, my pancreas (the exocrine part) is not able to produce enough digestive enzymes, or more specific the fat enzymes (Lipase). The other enzymes for protein and carbohydrates are so far on a normal level and I’m really happy about this function left.

You mentioned you were diagnosed in 2010 with type 2 diabetes; however this was the wrong diagnosis. What lead up to the correct diagnosis in 2016?

During the summer of 2016 I was already on type 2 drugs like Metformin and Repaglinid (both on the highest tolerable dose). After a cycling holiday my blood sugars were constantly over 300 mg/dl without any food intake for 3 days. So we took another blood test for c-peptide, which was 0.1 μg/l (the normal healthy range starts at 1.1 μg/l and above). From that day on, I started a standard Insulin treatment like a Type 1 would. Over all the years my blood tests also showed a liver inflammation and sometimes a pancreas inflammation. Simultaneously I had more and more problems with foods digestion, especially in my low-carb-high-fat time, but also later in my vegan-time. In 2016 these problems became so critical that we finally tested for the 3 types of pancreas enzymes. While the enzymes for protein- and carb digestion were ok, the enzyme for fat, lipase, was low. So the combination of pancreas inflammation, low Lipase, and no insulin production is the reason why I am classified as a Type 3c, diabetes caused by pancreas-damage.

What was your care like from 2010-2016? Were you taking insulin, using a CGM, etc?

After my diagnosis I took Metformin for 4 years. In 2014 I tested several other oral medications for T2D in addition to Metformin while my A1C was constantly getting higher. Repaglinid on a high dosage helped for 2 years. During this time I used a normal glucose meter, no CGM like I do today. Beside the medical/drug stuff, I was quite active in cycling and curious about all the different diets for diabetics. Also I drink no alcohol since 2010.

How did you and/or your doctors realize that that the problem was actually pancreatic damage? It seems odd for someone your age to be diagnosed with T2, so I’m surprised it took them so long.

In the end it is, in my case, a circumstantial diagnosis. The decreasing insulin production and the digestive problems were very slow ongoing, so the reason for this symptoms were hard to find. The first time we found high markers for pancreas inflammation was in 2013. While it was only a short episode, the pancreatitis become chronic in the end of 2015. From that point my A1C was slowly rising and the digestive problems controlled my daily life more and more.

Do you need to take medication for the other functions of your pancreas?

Not yet, at the moment I can handle the situation with a low level of fat intake. If the
problems increase again, medication like KREON or similar enzyme replacements will be an option.

What is the outlook for your pancreatic damage? Are you able to sustain it, or will it become chronic?

At the moment I’m really happy that there is no further bad progress. As we don’t know the reason for the pancreas damage, there is no concrete outlook for the future. I will take it as it comes.

You’re active in the diabetes online community, especially with type 1’s. What three things do you wish we knew about you and your diabetes?

1. As long as your pancreas has any function, it is not dead. And my deepest respect
for all those people living without their pancreas.
2. The term “type 3” has many different meanings. While mainly in Europe it is used for all rare forms of diabetes, I already heard type 3 as Alzheimers disease or type 3 as (healthy) family/friends of diabetics. And no, I do not have Alzheimers.
3. Some people already asked me, why I sometimes say that I’m thankful for my year long diagnosis story. Well, due to this unclear situation, I tried nearly all forms of diets, read and read about the different forms of diabetes and their scientific background.

The stigma and disassociation between type 1 and type 2 are stark in the diabetescommunity. Do you experience this yourself?

As I was first diagnosed as type 2 , I really had to fight an inner battle with the stigma about type 2 for several years. I tried to handle this diagnosis with 100% perfection and it was hard to see that more and more nothing worked out in a good way. I finally found my inner peace after I started the insulin therapy. I’m now an advocate therefore that all diabetics (type 1, 2, 3) should concentrate on their similarities: we are looking for good health and healthy blood sugars. We maybe not share the reason behind the different diagnoses and our therapies may vary, but that is no reason to fight each other. We should help each other and can learn a lot from each other.

I am truly in awe of Micha‘s story. To be so young and experience such a whirlwind diagnosis, it had to have been a rough six years until the doctors finally figured things out. I commend his positivity, openness, and drive; and I am so thankful to help share his story!